Humira, Infection, and Fistulas

[foxfire_joy]

Hey guys - I am so confused.

Here's the deal. Started Humira about 6 weeks ago. I did the first loading, second loading and then 1 shot every two weeks for 2 weeks.

So, I have a fistula with a seton in place. It was put in in November 2011. Diagnosed officially with Chron's in my colon Dec 24 2011. Was on entecort to begin with but kept having issues with the fistula - swelling etc. On and off cipro and flagyl until I started the Humira.

Things seemed to be going really well - no diarrhea, henry the fistula was behaving. Then all of a sudden, the abscess associated with the fistula previously cam back.

So, if Humira suppresses your immune system - is that why the abscess came back?

Also, I asked my cr surgeon and he said this could continue to happen until the Chron's is under control. He says this is the manifistation of my chrons - along with diarrhea.

So should I talk to the GI guy about increasing the Humira - should the CR Surgeon and the GI Guy be talking? How does this work?

I can't take Humira until I am off the antibiotics and the abscess is healed. What am I supposed to do about this flare in the mean time? I'm so confused.

I have found that juggling all these doctors is really hard and I'm so confused.

Thanks for any help - thoughts you can provide.

 

[PsychoJane]

Hello!
I'm afraid I won't be of much help here. I just want to let you know you are not the only one that gets confused with that abscess/fistula conflicting situation when it comes to Humira/(immunosuppressor in general). I was stuck in that situation back in november where they were giving me humira+Methotrexate and what looked like an abscess begun to form in the area where some of my fistula were. It's quite annoying when you can't really determine if Humira is "encouraging" the abscess but helping the fistula and well as you said, you are not suppose to take your Humira as your abscess is there.

I'm not sure if it is your surgeon or GI that prescribed the antibiotics? If it is your surgeon, I think I would check with the GI and see what he thinks. I know mine would let take my humira + antibiotic even if I had some sort of wanna be abscess. It was not a huge thing and that's probably why he did so. I think its a good idea to verify what he thinks about that.

 

[TammyKathleen]

Hello,

I also have fistulas (1 rectal, 2 recto-vaginal) and was started on Humira 6 weeks ago to resolve them, as well as mediating the other symptoms of my CD. I was diagnosed in January, 2012 after 8 years of UC and J-pouch. I just left my GI's office and she said that I was to continue taking both Cipro and Flagyl. She said the combo of those two antibiotics, plus the Humira, was the best shot of getting my fistulas back under control, with the end goal of getting rid of these 4 setons.

~Tammy

 

[Mountaingem]

Yes, I agree Tammy. I had a similar situation when I started Remicade. You really need the Cipro and the Flagyl for the abcess, and the Humira will take care of the fistula. It takes 3 months to reach full effectiveness for any biological drug. Mine healed up within two months and hasn't reappeared, even though the Remicade is no longer effective. I am switching to Humira next week.

 

[Mountaingem]

Yes, I agree Tammy. I had a similar situation when I started Remicade. You really need the Cipro and the Flagyl for the abcess, and the Humira will take care of the fistula. It takes 3 months to reach full effectiveness for any biological drug. Mine healed up within two months and hasn't reappeared, even though the Remicade is no longer effective. I am switching to Humira next week.

 

[TammyKathleen]

Mountaingem,

I have to say that I find Humira so much more effective than Remicade. The Humira is starting to give me my life back. Plus, it is sooo much easier than the Remicade (one shot at home) and I find there are far less side effects in terms of being sluggish and tired (which were my standard side effects from Remicade).

I wish you the best next week when you start it!!

 

[Mountaingem]

Tammy,

I'm so glad to hear that! Sounds like we had a similar Remicade experience. Thank you for the encouragement.

 

[TammyKathleen]

We all need that encouragement in these diseases. I am so glad I found this forum. My transition from UC to jpouch to CD has been scary and I couldn't have done it without all the help and encouragement I have found.

 

[Keepingfaith]

Funny!!! I am in the hospital for that reason. I am on antibiotics & Prednisone again because the Humira isn't doing it's job. Please keep me updated on what your doctors are doing! My GI is switching me to Cimzia Friday because Humira seems to only give me a few days of relief & has not stopped my flare yet.

I just got off Cipro so now I am on Flagyl & Rocephin? It's healing quite nicely. If Humira doesn't work for you, you could look into Cimzia maybe? I have heard some positive things so I'm hoping it gets me in remission.

 

[TammyKathleen]

Hi Keepingfaith,

I have heard that Cimzia is another biologic to keep in mind. I am sorry that Humira isn't effective for you. I have never heard of Rocephin? Does it have another name? Is it another antibiotic?

Thank you for letting me know that if Humira fails, there are still viable options out there! I remember years ago when I wasn't having effect with Remicade and there were not other biologics FDA approved for IBD directly. I remember thinking, "What now? Are they just going to put me down like a sick dog that no one can help?" It was a scary feeling and everyone acted like I was odd that I wasn't responding to the Remicade.

I am so glad there are more and more options being made available for us!

 

[Keepingfaith]

It is an antibiotic! The GI I am seeing in the hospital now(My GI is hours away) said he wanted to use a general antibiotic like Rocephin so I could see if it was something I might like long term since I cant hit remission. Rocephin is also called Ceftriaxone. We are waiting on some bloodcultures to come back so we can know I don't have something else also like C-diff. I guess that's why we are using a broad spectrum antibiotic first?

I was very glad when my insurance approved Cimzia. Apparently the company only likes to approve it for those who have been on Humira with no success first. Hopefully it works!! I am excited!